The Leukemia & Lymphoma Society Community : Discussion List - Coping with Loss

First year without dad, what to expect in grief down the road...

communityreply@lls.org — Mon, 17 Dec 2012 02:39:53 GMT

My father passed away from ALL in March and initially we all coped well but it happened so fast that we were all in shock. Recently (6 months later) I am feeling it worse and missing him more especially with the holidays. My dad enters my dreams all of the time and he's very sick in my dreams. I wake up in tears sometimes and it's really upsetting me. I see a grief therapist but she doesn't seem to help even though she's very sweet. Does anyone else experience bad dreams after losing a loved one? When can I expect to feel better and cry less? I still get choked up if someone talks about my dad and it's embarrassing. I thought I would feel a lot better by now but I still cry once a week sometimes more and I think about him constantly. Does anyone have any insight on how grief will manifest down the road. This is such a long journey... Thanks everyone and prayers to all of you.

Complicated Grief

communityreply@lls.org — Mon, 13 Aug 2012 17:29:10 GMT

This is an article about a study being done at Mass General about a new diagnosis called "complicated grief." I wanted to share it with everyone here, in case someone is going through it themselves and wants help.

http://www.wcvb.com/health/-Complicated-grief-to-be-considered-mood-disorder/-/9848730/12987100/-/item/0/-/esrk75/-/index.html http://www.co.strafford.nh.us

LOSS THAT COULD HAVE BEEN PREVENTED

communityreply@lls.org — Mon, 21 May 2012 23:57:36 GMT

Hi everyone, just received some bad news this Sat morn. My daughter-in-laws father passed away.He was always very private with his results he would just tell his daughter hes doing ok. He and I acquired cll around the same time, It turns out his wbc was 500,000 and was very anemic. he was scheduled for more chemo this week. He woke up Sat and didn't feel well so he went to the er, he seemed to be doing ok but during the night they found a blood clot on his lung and they ythink he p[assed from a heart attack. He left a note stating the fight is very hard and whats the point. His daughter feels he just gave up because he didn't want to go thru chemo again and he didn't see any hope with present txs. Even when I tried to talk to him about his counts he wouldn't open up.

My father just passed from ALL and I'm still confused

communityreply@lls.org — Tue, 20 Mar 2012 05:05:05 GMT

I lost my dad last week to B-cell ALL. I am in shock because he was diagnosed less than a month ago. He was admitted because a blood smear showed leukemia. It took the oncology team 2 weeks of "testing" once he was admitted to finally tell us that my dad wasn't able to be treated at all. He had 80% blasts and his lungs and heart weren't in great condition. They sent him to hospice where he died a week later. I just watched my father wither away having never had a chance to fight the cancer. I am traumatized by this experience. I feel a tremendous sense of guilt that dad wasn't treated sooner. I keep feeling like I should have asked more questions to the doctors or taken him to a different hospital. Was his diagnosis at age 65 doomed from the start? Does anyone over 65 survive ALL? The doctors seemed to communicate to us that over 50 years old is not likely to survive ALL or AML. Ugh, please anyone share insight. I lost my best friend. My dad will never get to see me get married or have kids and it makes me very sad.

Before death of a loved one

communityreply@lls.org — Sun, 08 Apr 2012 21:03:43 GMT

My dad, whom I live with, is going to die from AML within a few weeks or months. He's been in the hospital for the past four months with my mom, far away, doing three rounds of intensive chemo. After the third round he got fungal pnemonia and another infection, which I can't remember the name of, but it's like mersa. He was cancer-free in January, but the leukemia has come back and the docs say he is not able to do any chemo or anything else. My dad does not want life-saving measures like artificial feeding or breathing and he wants to die at home. He's 62, and we were honestly expecting him to come home and recoop and then go back in a while to get a bone marrow transplant. I'm 27 and work full-time, although I'm planning on taking some time off. I'm terrified of saying the wrong thing to him once he gets home this week from the hospital. I'm also wanting to do things with him that he enjoys. He will be using a walker, but is otherwise perfectly lucid and fairly healthy...it's mostly internal stuff. He can have visitors, but is not supposed to go outside the house due to germs. I would love to hear from people who have been through this kind of death with a loved one or are going through it now. What helped you get closure? What did you do once they were home? Were there any special things you did to help remember them or make their final time special?

major complications after allo transplant

communityreply@lls.org — Mon, 24 Oct 2011 04:45:45 GMT

Looking for any others with major complications after allo transplant and death.

In Loving Memory of My Fiance

communityreply@lls.org — Tue, 27 Sep 2011 16:52:02 GMT

On September 20, 2011, my amazing fiance, Felix Hernandez, lost his life after a 3 year long battle with Hodgkin's Lymphoma.

Felix was just the most wonderful, loving, sweet, caring, intelligent man I ever had the honor of knowing. The love we shared could never be compared to any other love. We met 6 and half years ago and we were attached to the hip ever since. What would have been our 6 year anniversary passed on Sunday. I feel him with me every day and I remind him every day that wherever he is, I love him. I will always love him.

Felix was a fighter. From the day of his diagnosis, he fought. He fought with the cancer, he fought with the hospital staff, he fought with me, he fought with himself. He vowed he would beat this disease. He underwent countless days of chemotherapy for 3 years and 2 transplants. Unfortunately, the complications from the allo transplant in June 2011 was too much to bear. He fought, the entiresummer while he was confined in the 4 walls of his hospital room...and he was recovering from graft vs host and was ready to go home...but unfortunately a bacteria sneaked into his system and he became septic. Sept 16 he was fine. Sept 17 he started to feel pain. By the following evening he was in ICU. Sept 19 he was sedated and very early Sept 20, his life faded away. I was by his side and will always carry him in my heart. It breaks me to the core to have lost him so suddenly...but he's no longer in pain. He's no longer angry, sad, depressed. The last 4 months of his life, he was miserable. Missed out on a beautiful summer. Our quality time was limited due to being in a sterile hospital room. He only got to spend 3 months in our new apartment. Now, he's at peace, no pain, happy. He's with friends and family he lost over the years, watching over me and his friends and family here on Earth.

He touched so many people and so many people are grieving for him. People have come to me and given me their condolences, but I give them my condolences right back. They all loved him, they were all touched by him. We all lost a piece of Felix. But we all have him in our hearts and souls and he is watching over us all.

His final wish for me was to live my life. I will live my life, for him, and I ask of him to guide me through the days, because right now I feel lost and alone without him. He did so much for me. But I know with him above, watching over me, my new guardian angel, I can get through this horrible loss.

So Felix, baby, honey...I love you. I will always love you. I will never forget you. You touched me in a way no one else has and no one else ever will...you are a part of me forever.

Love, Ariana

Missing my best friend

communityreply@lls.org — Fri, 25 Mar 2011 17:20:25 GMT

My husband just past away almost 2 weeks ago. He was the healthiest person I knew, until Sept. 09. He was told that he had a DVT in his leg and it would go away with asprin. He started taking asprin on a daily basis, when it did not go away I made him go back to the doctor. They did a full physical and called a few days later with blood results. We were at work and they said that he needed to get to the hospital as soon as possible because he was extremly anemic. After more tests at the hospital he was dx with ALL. The worst day of my life.

He went through several rounds of chemo and was told that the chances of him finding a bone marrow match was unlikely. Becuase he was biracial. After hearing that we were crushed. We went though a year and a half of chemo treatment after treatment. We were finally told that another hospital found an imperfect match. We met with the doctors and listened to all the risks, we decided to go through with it. We had nothing to loose. We went for a final round of chemo and then he developed infections in his lungs. The doctors could not clear up the infections. We were told that we had to let him go.

The hardest thing I have ever had to do was decide to pull my husband off life supprt. My best friend, rock, and strength. We were highschool sweethearts. I am now having a hard time dealing with all of this. I am 27 years old and a widow. I cant wrap my head around that, this was not in our plans. Sometime I find myself thinking that this is just another trip to the hosptial and he will be home soon. When does it get better??? Does the pain ever go away from watching a loved one die??

Sandra

Hi, I am new to this discussion board

communityreply@lls.org — Tue, 20 Sep 2011 01:05:23 GMT

Hi, I am looking to connect with others who have lost loved ones to AML.

Thinking about you Nicole

communityreply@lls.org — Sun, 18 Sep 2011 14:31:58 GMT

Hi Nicole,

Just wanted to say I've been thinking about you a lot lately and know today is your Mom's second year since passing. You're such a wonderful young woman and I know your Mom smiles upon you and within you.

Hugs and love, Jeri

struggling....

communityreply@lls.org — Sat, 25 Jun 2011 02:37:18 GMT

Hi all - I am new to this part of LLS - I have in the past been active on the multiple myeloma discussion board and found great support there. My husband was diagnosed 8/24/06 of MM at the age of 35 he lost his battle 3/26/11 just short of his 40th birthday. Day by day I struggle to keep it together. It's not about accomplishing anything at this point -it's truly about just getting through the day and keeping it together. I work full time and have 2 small children (6 and 4). At times I am in such denial and think he will come back to us, but reality hits that we won't. The life we dreamed of having together - raising our gilrs - growoing old together is gone. Though I have many friends and family that try to support me no one can truly understand that hasn't been here. I feel like my life has just hit a tremendously big brick wall. There are days I want to just curl up and hide from the world, but I can't because I have 2 amazing kids to keep going for and I promised my husband I would take care of them. It just hurst so much. Through the day I put on "the face: that everyone wants to see - how are you doing they ask? Hanging in there I answer - do they really want to hear the truth? Do they really want to hear that I feel like a big part of me has died inside? I find it truly interesting how people respond to the loss of my husband - those that promised him and me they would be here to help us have not been heard from. I guess life goes on - though I feel that mine has ended. Life for me is for the kids. I don't mean to sound so morbid and borderline suicidal - because I am far from that. I am just truly, deeply sad and missing the greatest man in the world - trying to understand something that I will never understand. Thanks for listening.